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The Tasweer-e-Zindagi TB Photovoice project aims to create awareness about tuberculosis (TB) by putting the voices of people affected by TB at the forefront of dialogue on this disease.

The project uses Photovoice to understand the situation faced by all those affected by TB: patients, their families, and community health workers, and to share their stories with community members, policy makers, and relevant organizations to raise awareness and support for TB.

Participants were eagerly involved in the project, taking snapshots of their daily lives and discussing the images they shared. The photographs document various aspects of the disease. While TB poses many difficulties and challenges, there are also a number of factors that support patients and people affected by the disease during their path to recovery. The project has been very successful in understanding the barriers that impede TB prevention, treatment and care. It is imperative that the lessons learned from the project are incorporated in TB programs and future projects.

I am in this condition because of my illnesses. Not only do I have diabetes, but I also suffer from TB and arthritis. The welfare society provides me with medicine for five days a week, but I have to buy it myself for the other two days. Even buying this is very difficult. For diabetes patients, wounds that are formed in a day take a year to heal, despite treatment. Because of my TB and arthritis medication, my diabetes becomes hard to control. I can’t work, even if I want to, because I am diabetic.

Mohammad Dawood, 50-year-old male, TB Patient

A boy is carrying a gallon of water and walking. This is because he is strong and healthy. I have this disease so I cannot carry any weight or perform difficult tasks.

Shahbaz, 17-year-old male, TB Patient

This is the ladder in my house. Climbing it is like torture for me. When it was hot, we would go up to the roof. But now, no matter how hot it is, I have to stay down. I can’t climb up. If I do climb up, it takes me almost an hour or so, and in that time the electricity comes back on. Instead of undergoing this torture, it is better for me to just stay down. The fact is, whatever happens, one must continue living. When you are faced with difficulties, you should keep fighting.

Tasleem Anwar, 36-year-old male, TB Patient

This appears to be an inexpensive, ordinary clock that we use to tell the time. But we don’t understand the importance of time. When we visit a patient, we must make them aware of the importance of time. There are times when we go to give medication to a patient and they say, “Yes, I will just take my medicine” or “I will take it a little later” or “You go, I will take it.” So we think, “Its fine, they will take their medicine.” But, we don’t really know if the patient is taking his medicine on time or not. It is our responsibility. It is essential [to understand] the importance of time because we do not know how much time we have left, or how much time anyone has left in life.

Huma Zaheer, 27-year-old female, Treatment Support

Whenever I go to give medicine to my patient, she makes faces. Most of the time, she tries to hide. Sometimes, she goes to her mother’s house sometimes to her neighbour’s house, and sometimes somewhere else. Her neighbours don’t like her coming to their houses because of her TB. Even her sisters-in- law don’t like her coming over. But she tries to hide anywhere she can to avoid the medication. I then spend 15 to 20 minutes, carefully trying to guide her. I talk to her and, while we’re talking, I give her medicine to her.

Azra Jawaid, 45-year-old female, Treatment Supporter

Before, when I was well, everyone used to visit me. My neighbours would ask about me, and we’d sit and spend time together. But when they found out that I had TB, they stopped supporting me in every way. My own relatives even stopped supporting me. Ever since I’ve been sick, all they say to me is, “Your house is broken,” “You need to repair this,” “This is broken from here.” If they can’t reduce my worries, why do they come to give me more stress? I’m not upset about my house. Whatever the state of my house is, I thank God for it. I am upset about people who criticize me.

Shabana Aas Mohammad, 35-year-old female, MDR-TB Patient

This looks like a parrot who is locked in a cage. However, this cage actually represents our attitudes. Through our attitudes, we can get TB patients to rise above their illness and low self-esteem. This is my request to all friends, relatives, and people who think TB is a very dangerous disease. This is not a disease without a cure. Through your attitudes and love, you should support these patients so that they do not become like this lonely parrot, imprisoned in a corner. In fact, they can become become healthy again. Our attitudes hold a lot of meaning for them.

Sonia Kandeel, 21-year-old female, Treatment Supporter

When my husband goes to work, I am completely alone. I actually got this disease because of my loneliness. There is no one with me. My husband spends most of his time away from home, at work. Just as this picture is empty, my life is also empty. I am completely alone. I never go out. I spend my life alone, with just the TV to keep me company. I have nothing else. My family does not allow me to get a job, and nor can I start a home-based business. I only go for walks, which are necessary [for my health] and give me peace of mind. I honestly feel that the cause of my illness is just this – loneliness.

30-year-old female, TB Patient

I don’t let my children come near me; I keep them quite far away. My heart cries because I’m the only one there to look after my children. There is no one else. My thirteen-year-old daughter has been looking after me herself for the past two years. She does everything for me: gives me my medicine; bathes me; and gives me food. There’s no one else to support me or to look after me, so my daughter looks after me herself. Because of this, my children have no future. No one comes near me. If someone does approach me, I feel very happy that someone has come to ask about me. But mostly people stay far away from me. Some [do so] because they see my poverty, others because they see my young children, and some because they see my disease. [They worry] that they may have to look after us or do things for us. So it’s just me, my room, and my loneliness.

Shabana Aas Mohammad, 35-year-old female, MDR-TB Patient

This is the end of every problem. The end. In life, people come and go. We fight illnesses with all our strength. We fight the germs, no matter how strong they are. But as soon as our body becomes weak, they harm us. Eventually, we succumb to its consequences and, as a result, we are buried in the ground. Whoever comes into this world must leave it for some reason or another.

Habib-ur-Rehman, 45-year-old male, Treatment Supporter

This is my niece. I love children. I used to sit with her, feed her, and give her love and affection. Maybe, because of this, my TB germs spread to her. Now, she is being treated at the Indus Hospital.

Nasir Hussain, 24-year-old male, TB Patient

It had become very difficult to keep a mask on all day; sometimes, I even slept with it on. I couldn’t breathe. Each minute, each second was very difficult. During those few moments when I would remove my mask to eat or drink, I felt like I had regained life.

Saima Arshad, 29-year-old female, MDR-TB Patient

In our house, there is a lot of disease and there is no one to treat it. My brother is the only one who can work, but even he does not have a job. My father is also unemployed and is a drug-user. Our house is also very small. Because of this unemployment, we can’t afford our medication.

18-year-old female, TB Patient

When one is ill, it is stressful because there is no one to earn a living. This affects other members of the household. You feel useless. If one stops working and earning, it creates a lot of problems. Living in a rented house, having to pay a gas or electricity bill, or financially helping someone – I can’t do any of these things. When one becomes unwell, it causes a lot of problems.

Saleem Ahmed, 27-year-old male, TB Patient

In the neighbourhoods where TB patients live, because of this filth, clearly there are endless problems.

Naseem Hussain, 36-year-old female, Mother of a TB Patient

This is a picture of a patient’s street where rain and sewage water have collected. We cross this with great difficulty to reach their house. It is also hard for the patient to go in and out [of her home]. We find it very difficult, and we worry that we may not be able to get their medication to them. I often stand on these stairs and give the medicine to her because I cannot reach her house. This is very stressful. My patient says, “Please come over. I have so much to tell you. Baji, please come over and give me my medication yourself.” When too much water has collected, I am unable to go. She gets upset and so do I. No matter what the situation, we have to get to our patients and give them their medication so that they don’t miss their dose. She has already had TB twice before. She now has multi-drug resistant TB. If she misses her medication, I don’t know if she’ll get better or not. I go with the hope that if I regularly give her medicine, she’ll get better.

Nusrat Sultana, 30-year-old female, Treatment Supporter

I have several illnesses. On top of everything this dog bit me. I also got treated for this at Indus Hospital. Because of my illnesses I am unemployed. How am I supposed to earn? Our public representatives do not fulfil their responsibilities; they create problems for us, when they should help us. Where can we go with our problems?

Mohammad Dawood, 50-year-old male, TB Patient

These are my two nieces. They have given me a lot of support. Like other children, they also enjoy playing ‘doctor’. One pretends to be a doctor and the other a patient. It’s like we’ve turned our home into a [pretend] hospital. We should encourage children to explore [through play], so that they learn the meaning of human compassion. We want to teach them about things like this from an early age, so that they can become good people with good standing in our society. We should have good relationships with children, just as we do with our friends. This is very important. My aim is not only to take pictures, but it is to teach these children about my illness. I often join in when they are playing and lie down, pretending to be a patient. This way, the children get to play, and it also makes me happy. The children also learn something from this and broaden their minds.

Ishtiaq Ahmed, 40-year-old male, MDR-TB Patient

Papa is the only earning member of our house and he does not make my brother work. My brother is still studying. Papa has singlehandedly dealt with all our problems. He goes to work even when he’s not feeling well. Papa loves all four of us brothers and sisters very much. He fulfils all our wishes. Ever since Papa left for Amman, Ammi developed TB. Because of this stress, he developed diabetes. Thank God, he is much better now. God Willing, our mother will also get better soon.

Ayesha, 17-year-old female, Daughter of a TB Patient

Two years ago, my complexion was even fairer than this. I was fine, plump and healthy. I became like this because of my illness. This is my sister-in-law. She loves me more than a sister. She looks after me in every way. We are four sisters. From the four of us she loves me most of all. If I feel even slightly unwell, she doesn’t sleep all night. She puts my head in her lap like a child and says, “Beta, lie here. I won’t move from here until you go to sleep.” If, God forbid, anything were to happen to my mother, [my sister-in-law] would never let me feel that I was without a mother.

Neha, 22-year-old female, TB Patient

I really enjoy seeing my children play, but I get angry when they’re mischievous. When I take my medication and rest, my children get very worried and wonder, “What has happened to our mother?” I tell them that I’m not well, and they leave me alone and play on their own. My children are considerate; they play elsewhere so that I can rest.

28-year-old female, TB Patient

The greatest thing about Indus Hospital is that it offers free treatment. Those who are poor and cannot afford treatment for their children can get their children treated here for free. Thank you for this.

Naseem Hussain, 36- year- old female, Mother of a TB Patient

These pigeons are sitting and waiting for someone to come and feed them seeds. They aren’t so proud that [they are concerned that] one of them is bigger, one of them is smaller, or that one of them is different. They eat whatever food they get, together. These pigeons live in so much harmony; they are all sitting together under the same shade. Human beings keep track of every little thing. These pigeons are not like that. They live with love and harmony. NGOs or other organizations collect medicines bit by bit to distribute to TB patients. Just like this, some people bring half a kilo [and] some bring one kilo of seeds to give the pigeons. If we are unable to provide for ourselves, some people struggle and work hard to collect medicine for us and donate them here. In this way, even we get a new lease on life.

Moim Khan, 48-year-old male, MDR-TB Patient

In the beginning I used to think, “God, I’ve become alone.” Then I started praying, even though I wasn’t able to pray. The effect of the medicine stays for 24 hours and so my eyes would start spinning and I couldn’t pray or do anything else. I couldn’t bend my knees but I used to sit down and pray. Whatever our condition, we should not neglect our prayers or leave our connection with God. It is by the Grace of God that He has made me better today. God listens to you. If you ask him, He will give. He, who has given you this hardship, will also heal you. He tests His people, so have patience during this test. With a little bit of patience, God will definitely help you succeed.

Farzana Salman, 40-year-old female, MDR-TB Patient

We go to pray in the church. I pray here with my whole family. We pray together. Thank God, I have been cured! No matter how unwell I feel, I still go to church. My husband really stood by me. My family members and people who would visit me also really supported me. When I was in a lot of pain, we would have prayers in our house and I would cry and pray. My pastor also used to pray [for me] a lot. I got many blessings from him. I thank God that today I can walk on my own feet. If you think too much or are very stressed, your illness will only get worse. If you stay happy, your illness will go away.

Sumaira Asif, 27-year-old female, TB Patient

This is my son’s room. I have put a door netting so that he gets fresh air and light, which are good for his health. This is a good environment from a medical point of view. We have also separated his room.

Mohammad Sharif, 36-year-old male, Father of TB Patient

I have planted this tree. I like it very much. I take care of it with my father. We get fresh air because of this tree.

Khurram Sharif, 21-year-old male, TB Patient

In this photograph I wanted to show that there is endless water and, in the distance, there is a shore. If someone is drowning in water, to save themselves, they will somehow find the shore. Similarly, TB patients are in a lot of pain and discomfort and they want to find a medicine that will quickly make them better.

15-year-old female, TB Patient

Before, this child couldn't even hold a small bottle of water. Now, by the grace of God, look how she's carrying my younger son. She used to have pain in her chest and back and wasn't able to carry any weight. Her eyes would fill with tears, and she would cry. We used to tell her, “If you can't carry something then don't. We are not forcing you. You should rest.” When she first started her medication, she rested for about three months. After three months when she became better, we advised her, “Walk around a little. If you walk around you will become stronger. If you continue to lie down you will shrivel up. It is necessary to walk around.” Now she is able to stand on her own two feet. She does her own work too. She even makes food [and] plays with the children. She’s completely fine now, thank God.

Mohammad Sayeed, 30-year-old male, Brother-in-law of a TB Patient

This is that moment of happiness when I realized that I was getting better. So, in excitement, I picked up my son and threw him in the air. He had a habit [of saying] “Throw me up in the air!” Before, I couldn’t even pick him up. I couldn’t even hold his hand to help him walk. When I threw him in the air, I was thrilled. This showed that I’m now getting better. I felt very happy.

Saleem Ahmed, 27-year-old male, TB Patient

CALL FOR ACTION

We, the participants of the Tasweer-e-Zindagi project, call for support for the following six steps to be
taken to reduce the spread of this disease and to create a supportive environment for people affected by
TB.

IN THE NEWS

The Tasweer-e-Zindagi gallery event received coverage in eight leading English language papers in
Pakistan, nine Urdu newspapers, and several online sources. Seven leading television news channels also
covered the event.

PUBLICATIONS

This study provides a look at the complexities surrounding TB and emphasizes the need for holistic
interventions for TB that address all aspects of the disease, including its social determinants. It also
highlights the potential of Photovoice as an effective means to bring much-needed attention to this
disease.

TASWEER-E-ZINDAGI FILM

This film provides an overview of the Tasweer-e-Zindagi TB Photovoice project, a PhotoVoice project with
people affected by TB. TB patients, their family members, and TB treatment supporters were given cameras
and asked to document their experiences, challenges, and supportive factors. This film shares the
experiences of participants during the project.